It has been a week and a half since my last day in the office and I am still trying to settle into my new life. What my new normal will be I am not totally sure. I guess it will take a little while for everything to fall into place. So much depends on how I feel and some of it depends on money. The good thing is I will have the time, when I feel good, to volunteer. I am so excited about the opportunity to help other people. I started today by volunteering in my daughters kindergarten class. That is always fun. I already have some other opportunities showing up. I guess I will see where things lead and just take it one day at a time.
The silver lining in my job ending was the timing. I am getting my butt kicked. New symptoms have shown up and old symptoms are back. I guess I didn't realize that my temperature issues had left for a while but with cooler weather settling in, I am once again finding I can't regulate my temperature very well. My hands and feet and cold most of the time. So cold in fact that I have to take a hot shower or bath to warm up. The problem becomes that I get so cold so I jump in a hot bath and an hour later I am sweating and can't cool off. Dealing with frozen food once again causes me excruciating pain. My joints are cracking and popping with increasing frequency. The muscle pain, weakness and creepy crawly feeling is back. The ringing in my ears is worse. I have muscle spasms everyday. I now have what seem to be tension headaches everyday. The list goes on and on. Very frustrating to say the least. Oh my insomnia is coming back and I am sleeping during the day, almost everyday. At least this past week I have felt almost as bad as I did during my worst time last year. I am not different than almost any other person with Lyme out there. We all seem to go through the same thing. You think you have turned a corner and then BAM you are knocked on your butt once again.
I saw the doctor yesterday to get my port flushed and to check and see where we were on this IV antibiotic deal. He still really wants me to take it so we are continuing the search for an affordable source to get it from. He is currently trying to work with an Indian Reservation back in the Midwest to try and get it. In the meantime, my parents decided that they didn't want to wait for me to start this and that we would find a way to pay for at least one month of this med from the pharmacy. By God's grace some amazing friends were able to pull together some money and although it would have covered 2 to 3 months of meds from Mexico we have ordered it up here in the States. Some came in today and the rest should be in on Monday. It looks like the month will cost us $1430. That is about $600 less then the other pharmacies up here but still not cheap. Especially if he wants us to do 2 to 4 months. At the appointment we discussed doing this new IV med called Invanza. He really wants to finish with a few months of that. However that med is more expensive at about $70 bucks a dose. Again, 2 to 4 months, IV everyday. So once this process starts I could have daily IV's for 4 to 8 months. God help me. That also means 2x a week to the doctor. That adds to the gas bill for sure. Maybe I need to buy a scooter. Haha. That would so not be smart. Anyways, so the doctor says, if you guys can pull together about $10,000 that should be good. I almost laughed out loud. I just have to remember I serve a big God and things are going to work out the way they should. He has already done some amazing things and will continue to do more I am sure. It makes me want to set my goal at about $20,000 so I can also try to go to Kansas. Just giving to God. He knows what I need to do and how this will work out. We did discuss a little more about all of those viruses I tested positive for. So basically I have all of those bugs in my system. There isn't a for sure way to test if they are active or not but they can become active if my immune system goes in the gutter. So I am praying that I can hang on and not reactivate any of those. I also had another blood test come back since my last visit that showed my inflammation levels are high. It is the C4a. Even though it was like double the normal he has seen much higher. That level probably makes sense for how awful I have been feeling. I also finally got a prescription for some pain meds. I went very mild with 400mg ibuprofen. I can double up if I need to. Most days I take nothing but there are days I need something. I was so hoping to not add pain killers into the mix but some days I will have too. The plan now is to start the new IV med on Tuesday and go from there.
I once again am trying to work on my diet. I found a great book called "Recipes for Repair" which is a cook book based on the Lyme Inflammation Diet developed by a Lyme Doctor. To give you a quick over view, there are four phases of the diet. The first phase is the most restrictive but it is only a week long. The diet of course cuts out or reduces sugars, gluten, dairy etc. So I have managed 3 meals so far and I am still alive. The good news is my husband is trying to go along with it. I really appreciate his effort. In order to give my self the best chance of sticking with this for any amount of time. I did have to give myself one little break. I still get to have my non fat mocha everyday. For anyone that knows me, or even if you have read any other entries, you know I am a hard core junk food junkie. So if a nonfat mocha is the only thing not on the list I have then for me that is amazing. I will say, the book tells me the first couple of days I might not feel great and that it will take 30 days to stop my sugar cravings. So I am hoping I can stick with this. The hard thing is it does take aways dairy and gluten for almost a month or longer also. So everything I love to eat is being taken away but I am realizing I need to go above and beyond to help my recovery.
I guess this brings my story up to date for now. I will certainly let you know how the new abx works, etc...Please check out my photo website if you haven't or my fundraising page. For those of you in the San Diego area our annual Lyme Walk is next weekend at Sea Port Village. The Lyme community would love to have your support. Then the following weekend my amazing Fire Prevention friends have arranged a fundraiser for me at the Belly Up Tavern in Solana Beach. There will be a hypnotism show and some great fun. It is on Sunday, the 23 at 3:00. Check out the Belly Ups website for more info or you can e-mail me at firstname.lastname@example.org for more info. Thanks for your support and keeping up on this crazy journey of mine. One last thing-Don't forget to watch "Under Our Skin" on Netflix, Hulu, some on demand cable services. It will really open your eyes to what is going on and awful reality of this disease. Love you all.